There is an interesting story from Asahan Regency, North Sumatra, which makes people’s eyes wide open about a rare syndrome in the world. The story is a personal experience of a family. Most of the family had Barber-Say syndrome.
In an opportunity to meet directly with the family, Arie Untung and Fenita Arie explained that this syndrome is very rare. There are only 25 people who have it and five of them are Indonesians. The five Indonesians are them, Mother.
The only son in the family, Syarif Surya Ali Manurung also said that so far, he still does not know his family history of suffering from a rare syndrome.
“That’s from my own parents, I don’t know. It’s only that we are descended from our father,” said Surya, his nickname, quoted from a video on the channel. YouTube BENEFIT STORYMonday (14/2/2022).
Surya explained, of the five members of the Manurung family, who suffer from this rare syndrome are the father and his four children. While the mother and two other children do not have it.
Even the father, never told about the syndrome they had, what happened to their faces that were different from normal people. Their father actually taught them to accept what God has given them.
“You don’t have to feel protested, because it’s not good either,” said Surya.
Meanwhile, being different from the other four siblings, his younger brother named Tiur Maeda Safni Manurung (18) considers this a normal thing. There was no difference felt by him until he grew up with his family.
“Think of it like a normal human being, there are no bad responses like that. There are no negative responses, always positive,” said Tiur, who is also lucky to be in a supportive school environment.
Surya revealed that their family is also not considered different by the residents around their house. Instead, neighbors embrace each other and there is no special treatment. The Manurung family also often stays in touch with their neighbors, so that the surrounding environment feels comfortable.
Because not many people know about this rare syndrome, the family suddenly went viral on TikTok. In fact, Surya made a video of his family for fun.
Read the continuation on the following page.
Also check out the psychologist’s advice when the family refuses the presence of a child with special needs through the following video:
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